Choosing To Fight

If you follow me on Twitter, you may have noticed that I had a not-so-hot doctor’s appointment yesterday morning. This past weekend was the worst flare I’ve had to date. I was in bed pretty much from 5pm Friday until 7am Monday. Nothing, I mean nothing, seemed to be helping the pain. Even my prescription medicines were not touching it so on Monday I started calling doctors. The pain clinic was my first call and since prescriptions cannot be changed over the phone, the nurse set up an appointment for 8:15am yesterday. I also called my rheumatologist who tweaked my dosages of my medications for fibromyalgia (we had discussed the possibility of needing to up the dosage at my last appointment so we both felt comfortable with phoning in the change versus needing to drive an hour for an appointment). I see my primary doctor next week so I knew there wasn’t a point in calling because there was no way I would be able to be seen before my scheduled appointment.

The visit to the pain clinic was supposed to be a short one which turned out to be not the case. Thirty minutes after my scheduled appointment time, the doctor finally came in and being as I was the only patient there I was already frustrated. The gist of his response to my pain-filled weekend was to be thankful that the flare didn’t last any longer than it did. I just need to come to terms with major flares being a part of my life and be ok with not having medications to treat the pain. He did not want to increase my dosage (although we had discussed the possibility at my last appointment) however he agreed to give me a extended release pain medication to help prevent pain from waking me up in the middle of the night. The catch (there always has to be a catch, right?) is that for now he wants to go back to seeing me every 30 days versus 90 for drug tests and pill counts. On the way out the door, he let me know that I was overweight.

Needless to say, I left the appointment angry, frustrated, and defeated. I was angry that it seemed that he had no concern for my quality of life as a patient. I was frustrated that, even though it was never said, he seemed to be thinking that I was exaggerating my pain in hopes to get more medication. I was defeated as it was if the prescription he handed me said really said “give up hope for ever having a normal life.” The twenty minute drive to work seemed to last an hour as I attempted to process everything that had just happened. When I pulled into my parking space, things changed.

As I took the keys out of the ignition, I looked down and saw the word “fighter.” It served as a powerful reminder and I made the conscious decision to not go down without a fight. I am not going to accept that my life is over and any hope of relief is gone. I am not going to allow one jerk-faced doctor take my dreams from me.

I can and I will fight. I will fight knowing that my God is bigger than my pain and He will provide strength to press on. I will fight knowing I have an amazing family loving me through it. I will fight knowing that I have strong and inspiring women who are traveling the same road fighting alongside of me.

24 comments on “Choosing To Fight”

You CAN do this, hon. Steps, remember? Baby steps. Two steps forward, one step back, if need be. That one doctor was your step back, that’s all.

As for his bedside manner, or the lack thereof? I have a rule — if you’re my primary care, you need to give me warm fuzzies, or you’re history (and thank GOD I have an awesome PCM). If you’re a specialist, though? I want you to be top of your game. I don’t care if you tell me I’m fat, ugly, and a disgrace to the face of the earth. If you’re good, I just.don’t.care. That’s how I’ve had to learn to look at it, because let’s face it, the majority of specialists, at least in my experience, don’t have great bedside manner.

I’ve said it before, and I’ll say it again. As much as I hate my injury, I’m thankful that it’s visible, easily seen on tests, because I’ve seen so many doctors who are jaded and just don’t believe that their patients are in pain, or in their self-described levels of pain.

Okay, I’m writing you a whole blog post here 😉 so I’ll stop now. But know I’m here & listening. Remember: just a step back. You ARE a fighter. Look at what you’ve done so far, how far you’ve come, what you’re doing now.

Love ya, girl! So glad that God brought C.C. & you into my life. Y’all have been more of an encouragement to me than you’ll ever know. 🙂

I have a similar philosophy except I don’t think this guy is even at the top of his game. I think he does just enough to get by. Being from a small town, you either get him or you drive an hour so I think he just counts on people sticking around for conveinence. I want to see someone who wants to make the pain better, not just medicate me.

I, along with every other person with a chronic ilness, has had that dr that sees you as a patient instead of a person. I hope that you’re able to find some help and glad that there’s always hope through our faith. Thankful to know you.

Ugh, I’m so sorry. My pelvic pain ended up being caused by a torn pelvic floor and I have to say my pelvic floor therapist was AMAZING. I felt like she was the first person ever to truly care about my pain and how miserable I was. And PT helped me SOOO much, I think it is worth doing for anyone with any sort of pevic pain because pain breeds tension which causes more pain. Not saying that it will get rid of anyone’s pain, but anything to help lessen it is worth pursuing!!

I love my physical therapist & I love that she only does pelvic floor PT even more! She is so knowledgable which really puts me at ease considering its such a personal area to work with. She’s given me so much hope that my pelvic pain will ease up as we start getting these muscles to finally relax after being in defensive mode for the past 8 years! I was a little nervous starting it but now I would recommend it to anyone dealing with pelvic pain!

I applaud your attitude to fight, and I think that drttt is a jerk, but it does almost sound like you’re in denial of your own pain and what it means for the rest of your life. Is it all sunshine and roses? No. But it doesn’t have to be stormclouds either. Find a way to make flares more pleasant. For me this meant that the check my mom gave me for christmas bought a roku box for the bedroom. Now when I am having a huge flare I can watch netflix and many other wonderful channels. All the things I don’t have time for chasing three kids and working.

I don’t wanna be a downer, fight to your hearts content, but don’t lose focus that if you use your spoons fighting you won’t have any left for loving.

I don’t think I’m in denial. I have the understanding that pain, at some level, will always be a part of my life. It may or may not get worse. I’m not denying that. The only thing I’m refusing to accept is that I should just roll over and accept that I have pain because “my body is wearing out” or that there is no chance of relief in the future (which is basically what my pain doctor suggested). I accept the fact that pain is a probably going to be a part of my life, of my “new normal,” but I refuse to believe that there is absolutely nothing we can do about. Yes, my illnesses are incurable but that doesn’t mean we can’t a way to treat the symptoms, specifically the day-to-day. I know flares will happen and those days the pain will be harder to treat and that’s ok. I’m fighting for the day-to-day symptoms so that I can use my spoons for loving!

So sorry you’ve been dealing with such bad flares. You are so inspiring, and I’m glad you have a blog to share your fighting spirit with the world. I wish some people I know & love could be fighters like you.

Having had fibro for over 10 years, IC, vulvodynia, RSD in 3 places, I have had many doctors… While most have been wonderful, I have had an experience that I need to forgive so that I don’t harbor anger and stress; easier said than done! Don’t take it personally, your dr sees hundreds of people with various issues and was probably trying to convey that drugs aren’t the full answer to this type of pain. We will still have horrible pain days when even “breakthrough” meds don’t help completely; if we recognize that and realize that “this, too, shall pass” it helps to take the fear and anxiety out of the picture. As for visiting every 30 days, that is probably the law for patients receiving the meds he gave you. Certain classes of meds require that you are seen every 30 days and only receive that many days worth of med. They sometimes count pills to be sure you are using them appropriately, and may give drug tests on each visit. I thank them, as I figure it is for my protection… After all, I do not want to be addicted to something on top of my other issues!:-). As for weight, the meds make you gain as does inactivity from pain, but I think studies show that more weight=more pain and joint issues. Don’t let a bad bedside manner discourage you!!! I’m praying for your peace and that you remember we do not fight against “flesh and blood” (Eph 6:12). Read Romans 15:13. Blessings to you!:-)

I’ve been seeing this doctor for 18 months so I know all the ins & outs of being a patient at a pain clinic and don’t mind the pill counts and drug tests but after being released to only need to come in every 90 days and then moved back to 30 day intervals and make accusations of abuse is crap. I understand that drugs aren’t the full answer. My issue is that he is not willing to try anything else. I’ve asked about nerve blocks and other alternative and he just blows them off and says that they won’t work. I get that every doctor is not going to be warm and fuzzy and I’m ok with that but I draw the line at not giving any concern for your patient’s quality of life.

*hugs* I’m so sorry that you had to go through all this additional pain and what comes with it. Your post instantly reminded me of 2 experiences I’ve had – 1 with a clinic doc, 1 with a rheumatologist. If I had just settled for the advice that the clinic doc (who I’d seen many times) had told me I would’ve never seen another doc and finally be given my fibromyalgia diagnosis. The clinic doc had basically told me, “Suck it up, I’m in pain too. You need to learn to live with it, I see nothing wrong.” I know how hard that type of news is to hear, when you’re fighting to find solutions that help you have a higher quality of life. I’m glad you had that keychain and drew courage from it.

It sounds like your rheumatologist and you have a good relationship. Maybe you should discuss this situation with him and ask if he has a recommendation of a different pain doc that might be a better fit for you – more open to trying various treatments to find to find something that works for you. Of course, you could also try to discuss your feelings of disconnect between the pain doc and you with the pain doc and maybe that will help him see that you are being realistic, but you’re also not giving up. I’ve had this work well my with current rheumatologist, but I’ve also had it not work. When I tried to have a similar discussion with my old PCP it just reinforced the fact I needed to find a new PCP after he listened to what I said and basically didn’t care. When dealing with chronic conditions is it so important that our doctors consider us part of our healthcare team since science doesn’t (yet) understand all about our conditions.

Anyway, just thought I’d share my story a bit too – hoping it offers some sense that you’re not in this alone. Good luck! I hope this situation (and your pain) improves soon!

So sorry you had such a crappy experience. Sometimes the wrong doctor can be worse than no doctor if they’re not listening to you. Holding out for the right one is a lot of trouble but so worth it. You’ll make it through this — and I hope you feel much better soon.

Hi, I just posted some comments to your blogs around bowel obstruction surgery; after reading this post I felt compelled to reply again! Doctors who shame their patients– this should count as malpractice, in my opinion. I had an experience like this with the trauma surgeon who did my bowel obstruction surgery and who told me that “pain never killed anyone” when I tried to share my perspective on the poor pain management I experienced post-surgery. I too have a chronic condition… the way I have learned to deal with situations like this is:
1) is there anyone to whom that doctor reports and to whom I can give feedback to? Including the Medical Board.
2) is there another doctor from whom I could get better care?
3) most importantly for me my sanity and my continuing ability to have faith in very difficult circumstances: what is this experience here to teach me? Was my encounter with this type of doctor given to me as a mirror of unspoken things I might feel towards myself? Or as an opportunity to learn to advocate for myself? Or as a kick in the butt from the universe to get a better doctor? I choose to believe that I can always learn from experiences, And this often allows me to be grateful for even the negative or difficult ones. Otherwise, I would have given up by now.

I know this is an older blog so hopefully you have a much better physician now! In any case, thanks for posting.
–Joyce

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Information posted here should not be considered medical advice. It is not intended to replace consultation with physicians or other healthcare providers. A New Kind of Normal covers my personal experience and because every person's experience is unique, it should not be relied upon as a substitute for professional healthcare.